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Stunned...I need your help, advice, kindness

moonstruck19
moonstruck19 Member Posts: 14
edited December 2021 in Just Diagnosed

Hello new friends,

I was just diagnosed with IDC Grade 1, and DCIS in the right breast. The IDC is about .5mm. DCIS is also very small. Radiologist and OB GYN assured me this was a very small lesion, and caught very early. Thank God for 3 D mammography. Still waiting for receptor status from pathology. Ultrasound under arm indicated it had not spread to the lymph nodes.

Both my Dr. and a friend who is a BCS said treatment is most likely lumpectomy with radiation followed by hormone therapy depending on ER status. They said majority of ER (about 80%) is positive, and can be treated with hormones after radiation, so we'll see.

I'm scared. I'm a plethora of emotions. I have an MRI scheduled for this week, and initial consult with a BS next Tuesday.

I know I am lucky it is very small, caught very early and Grade 1, so there's that. I'm also very fit, don't smoke or drink, healthy BMI, exercise regularly, no history of BC or any C in my family, age 60.

Any advice or comfort would be appreciated.

But I can't stop crying....I go up and down. Thank you so much for your help!

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Comments

  • eviec1
    eviec1 Member Posts: 80

    It is really a rollercoaster of emotions, especially at the beginning. Like you, I was completely stunned by my diagnosis; also, like you, I was very fortunate that it was caught early (also about 1/2cm of IDC, but a larger area of DCIS, about 3.5 cm). I had lumpectomy, radiation, and I'm now on Tamoxifen to hopefully prevent recurrence.

    In terms of treatment, a lot will come down to your ER and PR status and HER2 status. The majority of breast cancers are ER+/HER2-, but of course not all are, and that could change your treatment. So now, unfortunately, you need to wait on that information - and the waiting is terrible.

    Once they have all the information they need, things will start moving pretty quickly, which is overwhelming at times, but also a blessing to get proactive on taking care of the problem.

    Good luck - it's never an easy road, but I do always count my blessings.

  • moonstruck19
    moonstruck19 Member Posts: 14

    Thank you so much! I am hoping for a positive ER status report, hopefully later today. And you're right. The waiting is terrible.

    If anyone else can give me advice, I would appreciate it. I feel so alone.

  • spookiesmom
    spookiesmom Member Posts: 8,149

    Do some fun stuff to take your mind off the waiting. Stay away from dr Google he is not your friends right now. Think about the holidays, and that you will make it through all that.

    The waiting is the worst right now. You want this out yesterday. But it’s hurry up and wait. There will be more tests. All normal stuff to happen on this crazy ride.

    And you don’t have to be brave, you just have to show up. Don’t forget to breathe

  • moonstruck19
    moonstruck19 Member Posts: 14

    Thank you

    Dr Google is not my friend. lol


  • I know it's scary but once you research this and hear other stories you will realize that you are extremely lucky!!! That is so small and great job catching it early. Thinking of you. Take a deep breath. You are in good shape. Also, it's not the end the world if it's not ER positive. Mine was TNBC but small. I did have chemo which sucked but it all could be so much worse. The fact that it's not your lymph nodes is also a really good sign.

  • moonstruck19
    moonstruck19 Member Posts: 14

    I am terrified of chemo. My mind is racing a mile a minute. I'm sorry to everyone for being so dramatic, but I'm really scared.

  • Roo73
    Roo73 Member Posts: 28

    Moonstruck, listen to all these wise ladies, deep breaths, go do some fun stuff or binge watch some TV. Or get your carpets cleaned, or refinish your floor…

    Everything is going to happen one step at a time, and you will manage and (if necessary) gradually accept each step as you get to it. If someone had told me this 4 months ago when I got called in for a biopsy, I would not have believed them, but it is true. Spookiesmom is right: you just have to show up. You don't have to feel brave, or positive. Weirdly, with every step I complete, I feel braver and more positive. I think you will too.

  • alicebastable
    alicebastable Member Posts: 1,934

    Moonstruck, look how many members are on this forum. We're the Been There, Done That club, and the membership is huge. You'll get through this like we all have, but yeah, the initiation sucks. Like Spookiesmom said, do some fun things! I did that deliberately when I had my cancer year, alternating appointments or tests with things like day trips, watching favorite funny movies, going to a concert (pre-Covid). And when I think back to that year, I remember the fun stuff more easily than the medical blur. Think of it as a mental health investment.

  • spookiesmom
    spookiesmom Member Posts: 8,149

    Chemo May, or May not be in your future. It’s not fun, but doable. It’s not as horrible as movies and tv would have you believe. Some ladies here have working through chemo. You MO has a lot of options to help. If you do need it, and a port is suggested, get it. Makes infusions a lot easier. I still have mine after 9 years

  • moonstruck19
    moonstruck19 Member Posts: 14

    Thank you ladies...as you all know, the waiting sometimes is the hardest part, especially when you're in the stunned/processing stage.

    The good news I'm hanging onto is that the IDC was caught very early, is "teeny tiny" (as per my radiologist), and Grade 1. DCIS is also small, at 6mm

    The er receptor finding is what is worrying me at this point.

  • exbrnxgrl
    exbrnxgrl Member Posts: 4,642

    The dcis will be taken care by any treatment for IDC. Why are you concerned about your ER receptors? I don’t have a crystal ball but it appears that you have many things in your favor. Take care.

  • moonstruck19
    moonstruck19 Member Posts: 14

    Thank you! I'm concerned about the er receptor because that will indicate my course of treatment, as per my OBGYN.

    That, and I'm a bit neurotic right now. lol

  • moderators
    moderators Posts: 7,681

    Hugs to you moonstruck19! All the emotions are very normal! Medicating. And as you said, waiting for all the information and plan is very stressful.

    We're just glad you found us. Please keep us posted, and stick around here for support!

    Warmly,

    The Mods


  • moonstruck19
    moonstruck19 Member Posts: 14

    I really appreciate all you ladies. Hugs

    I know I'm letting my mind get the better of me, and I need to stop. I need to see there are many factors in my favor so far, and that's good news.

  • voraciousreader
    voraciousreader Member Posts: 3,696

    while you are waiting…register on the NCCN website and familiarize yourself with the various types of breast cancer and the protocols.


    that said…you have excellent prognostics and you should do well.


  • salamandra
    salamandra Member Posts: 723

    I am younger than you but I still feel like I came of age in a time when breast cancer seemed like a death sentence. In fact, it killed my mother. When I was diagnosed, I was terrified.

    But the truth is that breast cancer is diagnosed frequently at an earlier stage, and better treatments exist than ever before. The vast majority of people diagnosed with breast cancer will not die of breast cancer.

    It's still scary because you know it could come back anytime, but the truth is, the world is scary and we never know when our number is up. And the connotations of cancer that we grew up with grip us hard.

    Hopefully you will go through treatment, whatever it is, and be able to look back on this as just an episode in your life, not a defining arc. But whatever it may be, you will deal with it.

    A lot of this will be a mental/emotional challenge, possibly even more so than a physical one. Take care of your head and heart and let the doctors do their jobs.

    The beginning is terrifying. Just hang in there for now! Heart

  • Ibugila
    Ibugila Member Posts: 2

    Hello Moonstruck. I am also in waiting mode. I've got the dx, IDC, 2 tiny ones and one 2cm. ER+ HER2-. I'm 63, in good health, exercise regularly, BMI has snuck up a bit but still ok. The wait to talk to the surgeon was 3 weeks, it happens tomorrow morning. Hopefully everything will proceed faster now, the waiting is torturous. We can do this!

  • jhl
    jhl Member Posts: 174

    Moonstruck,

    You are justifiably afraid of the diagnosis and possible treatment choices ahead. We have all been there with our minds racing so we couldn't make sense of it all from one hour to the next. But, your cancer has been there for awhile - probably several years. You have made the very first big step - diagnosis. Rapidly, you will be consumed with pathology, surgery, surgical pathology (which will be definitive) and further options. You cannot change what has already occurred. You can, however, approach this one step at a time. I agree with others, read here and familiarize yourself with others in your diagnostic category, read the NCCN guidelines because that is what all US treatment plans are based upon and keep an open mind with your physicians. They want you to have a long life just as you want.

    Stay well,

    Jane

  • moonstruck19
    moonstruck19 Member Posts: 14

    Good morning everyone,

    Thank you all again for helping me.

    I spoke with my OBGYN yesterday and the er receptor status still hasn't come in, but she's pretty optimistic about my chances of er positive, since it's the most common, and due to other factors in my medical history. *fingers crossed* She said the huge majority of her patients, including her MIL who had my diagnosis are doing excellent. That made me feel a lot better.

    Thank you for the suggestion about NCCN. I did check out the NCCN website and it was helpful...it solidified what my Dr said my treatment protocol would probably be.

    It's not helping that I didn't sleep well last night, but tonight's another night. I just need to get into a positive mindset...one day at a time, one step at a time.

    MRI is scheduled for this Friday. Can anyone give me help/advice/tips to make me more comfortable about this procedure? I'm very claustrophobic. Thank you!

  • spookiesmom
    spookiesmom Member Posts: 8,149

    Close your eyes before they slide you in, don’t open until done. You will most likely be on your stomach face down. That should help. You can ask for a sedative , but then you will need a driver. And they are loud

  • moonstruck19
    moonstruck19 Member Posts: 14

    Thanks spookiesmom.

    My husband is driving me, but I will take a xanax before. They told me it will be a wide bore machine, so that helps. I'm hoping the tech will help in making me as comfortable as possible with pillows, etc. Closing my eyes is a great idea.Not sure I'm going to like the face down, though.

  • Roo73
    Roo73 Member Posts: 28

    RE the MRI, the table is very much like a massage table, and if you're face down you won't have to stare up at the intimidating machine. Yes, it is LOUD. The massive amount of energy needed to create such a strong electromagnet has to be released somehow, so (long story short) it escapes the system as noise… I found this both interesting and reassuring, as in: the huge racket doesn't mean the machine is about to fly into pieces or something. You will get ear plugs and protectors, so it will sound muted and far away. If you look online there are lots of videos where you can hear what it sounds like.

    In my hospital they also leave you with a "panic button" that you can squeeze if things are absolutely intolerable, and they will stop. The device is right there in your hand the whole time. I assume that's standard. Obviously they'll have to start again at some point if you want the scan, but it's reassuring to know that you are ultimately in the driver's seat.

    Also—chemo has a similar problem—in the movies whenever they are sliding someone into an MRI machine it's a small child with a rare cancer or a young woman suffering from a mysterious disease that stumps the doctors, and sad music is playing… I realized at my first MRI that part of the reason I was scared was because of images like this.

    Funny how I have never ONCE seen a realistic representation of an MRI, noise and all, in the movies.

    But I digress. You've got this.

    (EDITED to say: I forgot to acknowledge that I am really, really lucky not to be claustrophobic. I wasn't really very helpful there, I'm sorry. But Xanax/Ativan is good stuff.)

  • typhoon
    typhoon Member Posts: 59

    Moonstruck, I had all of my breast MRIs and MRI-guided biopsies done at the INOVA Schar Cancer Center in northern Virginia. Unlike previous MRIs, where I went in head first, I went into the machine feet first for the breast MRIs. This meant that there was lots of light and no claustrophobia, I could see parts of the room (well, parts of the floor anyway), and the technicians and I could talk directly to each other without having to use the microphone/speakers. I don't know if this is standard or not, but it made all the difference in the world to me. Hope your MRI experience is as easy as possible!

  • mle42
    mle42 Member Posts: 124

    Moonstruck, I'm so sorry you find yourself here, but hopefully you can feel the virtual hugs coming at you from all directions. I vividly remember the days between initial diagnosis and treatment as being the most stressful of the whole process so far - honestly more stressful than surgery or chemo! Hang in there, it won't be too long before you have all the information to get a treatment plan, and then - as was said above - you just show up. In this time of waiting.... watch some silly movies, treat yourself to whatever you find fun and distracting.

    Xanax before your MRI is a very good call. I had two breast MRIs at two different facilities, both times I went in feet first and my head was at the edge of (or maybe even outside) the instrument. Hopefully yours is the same, to ease your worries about claustrophobia. Definitely don't be shy or reluctant about speaking up if you are even slightly uncomfortable before they start the scan. Take as much time as you need to have the techs get cushions/foam wedges/whatever you need stuffed under and around you to be super comfortable. The scan takes a while, so something that is just mildly uncomfortable to start with can end up really uncomfortable by the end.

    Fingers crossed for you!

  • debal
    debal Member Posts: 600

    moonstruck, the place I go has a fan. I think it helps to have some air circulating. I agree, get as comfortable as possible from the start. If you think it's helpful you can ask the techs to keep you posted on how much time is left from time to time.. I've had it both ways. The last time they did not tell me. I found that more stressful because it was getting uncomfortable but knowing the end was near just helped me get thru. Hang in there.

  • minustwo
    minustwo Member Posts: 12,997

    Moonstruck - YES to the Xanax. The only time I take Xanax is for MRIs and PET/CTs - but otherwise I can't hold still for the length of time they need, not even discussing the claustrophobia. Good luck

  • DarlenePB
    DarlenePB Member Posts: 1

    A cancer diagnosis is shocking. We always think that it is something that directly affects someone else. Until it happens to us. I felt all of the emotions you mentioned! I was shocked to learn the statistics are 1 in 8 women will have some type of cancer diagnosis! Number 1 - do not hold in your emotions. Have a good cry. Then take a deep breath. You are fortunate because your cancer was found EARLY. This is AWESOME! You have access to treatment and will be able to make choices about your care. When your doctor gets the specific information about your cancer, you will be told different options available to you. I tried not to get too anxious. Why worry about what might not even happen? Once the doctor has the info from the lab report things will go quickly. I did read the basics about early stage breast cancer, so I would have some information about what to expect. I wrote down all of the questions I had so that I would be prepared. My cancer was early stage 1A, .4cm! TNBC. I chose a lumpectomy. Then chemo - 4 treatments, 3 weeks apart. There was NO discomfort during the chemotherapy. The infusions were almost like a trip to the spa - drinks, snacks, warm blankets! The reaction afterwards will vary according to the type of drugs you are given. I was so tired! Then I would feel better and it would be time for the next treatment! Finally, I had 6 weeks of radiation. That ended 2 weeks ago. There was a tiny bit of tiredness, but nothing that kept me from doing things I enjoyed. I believe that this experience has made me stronger. Through the grace of God I am a survivor! I enjoy each day and don't take anything for granted. I have an increased empathy as I understand what people stricken with this disease go through. Focus on people, places and things you enjoy. Pamper yourself. It is important that you keep a positive attitude - this will help you fight the cancer. I followed my doctor's advice to drink plenty of water and be as active as I felt I could be. I tried to walk each day. Think of things you enjoy doing and do those things each day! *I was worried about what my emotional state would be during my MRI. I had the most calm comforting techs, who quickly put me at ease. I was given a choice of music to listen to and made to feel so warm & comfy and safe! It is one of my most pleasant treatment memories!

  • illimae
    illimae Member Posts: 5,517

    moonstruck, for MRI anxiety, I definitely agree with closing your eyes. I like to focus on a happy place, which for me if often the beach or a river, it’s easy to imagine floating when your laying on a table. Also, for fun, I like to imagine what’s making all those noises you’ll hear. I picture watching a 1950’s syfy movie while construction workers are outside and kids are banging pots and pans. Good luck.

  • Roo73
    Roo73 Member Posts: 28

    Moonstruck, in your pocket with you right there for the MRI.

    Xanax + you're not alone in there = you can do this.

  • scar1888
    scar1888 Member Posts: 23

    Moonstruck, I'm praying for you and boy, do I ever get the anxiety but ........ what are your favorite things to do? I love gardening, knitting, practicing calligraphy. Do you have any hobbies to keep you occupied right now? While being nervous it really does help if you're doing something you enjoy~!

    I am 66, and a 24 year survivor as of Oct. 24th, 2021, and very blessed. The doctor was so so certain it was very early, in fact, I was so happy to hear this that I literally kicked up my heels while entering the parking deck!~ Come to find out it was one cm tumor and four out of twenty two lymph nodes, positive. I got through it and you can too!

    Write back if you'd like.